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glioblastoma stage iv

bevn
Posts: 2
Joined: Apr 2003

my name is bev, my mom aged 62 was a rn nurse was
diagnosed with this horrible disease with no warning signs until emergency surgery was needed on feb 25. thank god she had a great team at ny methodist cornell weill hospital. we also did a second opinion at sloan. she had 60% removed from
surgery. the rest had to be chemoed with pacltamaxl and two types of radiation therapy. we have gone on a emotional roller coaster because of brain swelling due to her falling and the effects of radiation. thank god she did not get sick from the chemo except for hair loss. she is now entering the hospice program because the type she has is usually fatal even with treatment and it always reoccurs. it is very tragic how she is left, incontinent, short term memory loss, vision in left eye questionable at times, equilibrium is sloped to the left. loss of
right hand and leg to move. most of the time she is chair bound or bed bound. it is about five months into her illness and i do not see any improvements. i believe she will slip into another coma. she has survived at least three. the only reason she survived was the decadron to control brain swelling and we know this will not work for long. her husband is useless too old to care for her and no he is not my father. he tried to interefere with the entire family verbally and physically which does not help matters. also mom left her personal affairs in a mess and my only brother is not too good in being there as much as i am. i am burned out by this experience. even though we have hospice and a health aide it is still very overwhelming to me. i would like some suggestions or ideas with coping with this. my mom has figured out she will die of this because she is a nurse and knew about cancer.

mom27liveson
Posts: 5
Joined: Apr 2003

Hi Bev. My name is Jennifer. I was diagnosed with astrocytoma(brain tumor) about 4 years ago. My cancer is/was not as bad as glioblastoma, but I was only 24 when they found it. I had just had a baby 6 wks earlier, so you can imagine how frightened I was to hear "CANCER". My oncologist suggested I talk to a psychologist and am I glad I did! I don't know how old you are but you might consider seeing someone like that. She(my psychologist) knew quite alot about my physical condition and let me share my fears and inner thoughts with her. My family was scared enough, I didn't want to tell them about my fears, but I needed to talk with someone. I know she helped me. Maybe you could find some sort of peace too. You can e-mail me at: jhaynes37184@netzero.net if you'd like.

janellybelly's picture
janellybelly
Posts: 1
Joined: May 2003

Hi Jennifer. My name is Janel. I was diagnosed with a grade II Astrocytoma in July of 2002. In January they preformed a partial resection and red-diagnosed. It is now a glioblastoma. I am doing amazingly well, but many of my friends abandoned me out of fear, so if you would like to get to know me, I could use the support. My e-mail address is janellybelly26@yahoo.com

betty2
Posts: 91
Joined: Apr 2002

I know exactly what you are going through. My son (48 yrs old with a wife and 3 teenagers)was diagnosed 10 weeks ago last wednesday, they only did a biopsy on him and when the report came back, they told us to just enjoy him as he had about 3 to 6 weeks to live. He is now in a nursing home can't talk, hardly moves his left hand or foot ( he can sometimes but not often) He has had seizures, this week end he ran a temp of 103.8 he did this Friday and Saturday and this morning before we left ( he lives in San Angelo Tex) his temp was back to 98.6 I'm not sure if he knows us, some of the time he will nod yes or no but most of the time if he has his eyes open it just looks like no one is there. We have just taken him off of everything but pain meds. He was taking Decatron also. He had a few Radiation treatments but never made it to the chemo, he got pretty far out of it. The Dr.s told us that pretty much nothing would help as his cancer is inbetween the 2 lobes and very deep down, so they wouldn't do surgery. The Dr. said he was afraid he would tear up more than he could fix if he did do surgery. My son is a Dentist and actually worked the day he was diagnosed. We thought he had a virus as his only symptoms was throwing up, that started on a Friday and he went and got a shot for nausea and that stoppped his throwing up so he went on to work,girls at work was the ones who called his wife and she took him to emergency and they found it on the follow ing Wednesday. It certainly hit him like a bolt of lightening. He is our only child, so you can imagine what we are going through.
Nuesing homes are expensive, but he is getting wonderful care there so it will be worth every penny we have to pay for it. He also is on the hospice program and they are wonderful also. They haven't been able to tell us a lot but are good perscribing pain Meds. (Garys Head hurts some of the time)
Just know my prayers are with you. I go on the cancer surviver net work and go to the chat room, Kinda helps to talk to people who have been there and done that. However you are the only one who I have run accross with some one that has glioblastoma IV.
My email address is jodnns@aol.com if you would like to email me.
Betty2

SunnyFL
Posts: 1
Joined: Apr 2003

Hello. I wanted to respond especially to Betty2. First of all, my heart goes out to you all!! I know first hand the pain that is involved in watching your loved one be devastated by this horrible cancer.

My father was diagnosed on 2/25/03 with a glioblastoma stage iv, also in the worst possible place, deep inside. Surgery was not an option so we started chemo (Temodar) along with 30 treatments of radiation. Happy to say that his last one is tomorrow!!! He has tolerated it all very well.

We too were taken by total surprise one day, he only had some blurred vision on the left. He was left immobile on his left side after the biopsy, when I was told he possibly had 6-12 months. No one can prepare you to hear those words!!

Our family has been able to care for him so far and we are trying to get him strong enough to go for rehab. We are still fighting, but as we all know, we take one day at a time.

I never even knew such a thing existed prior to this and it horrifies me to find the number of people out here talking about it. I hope somehow each of us will get some small miracle to help the ones that we love!!! I know my DAD means the World to me.

I'm happy to chat with anyone, somehow it seems to help just a little. My email is kgtcleonard@netzero.net :)

betty2
Posts: 91
Joined: Apr 2002

Hi, My son passed away on the 30th of April. He went very peaceful. He had several seizures on the last 2 days, couldn't move either arms or legs.
His whole brain looked like some one had shot it with a pellet gun and every place where we could see a little spot made another tumor. His was just untreatable or operable. He hd a few radiation treatments but even with the decadron his brain swelled and he had a seizure, so we had to quit that. He was on massive doses of decradron.
He is in a much better place, and now our healing has begun.
betty2

amyatkaz
Posts: 2
Joined: May 2003

Hi, I am so glad to finally find a support group I can relate to. I lost my dad on sept. 9th, 2002 to glioblastoma. In August of 2001 he was first diagnosed after having had a seizure. Within days he had the surgery and they successfully removed the tumor. However, we received the news that it was a grade IV. He went through radiation and chemotherapy. He had a really nice winter and spring, his favorite thing to do was hunting and he had a lot of time to do it. In the beginning of June 2002 he suffered another seizure only to find out the tumor had returned he had another surgery and got out of the hospital the day before my mom and his 29th anniversary. Only things did not get better he got much worse and on Aug 2nd we found out the tumor had spread and there was nothing more they could do for him. I am only 28 years old and I feel like I have suffered the worst pain possible aside from the pain my mom deals with. We kept my dad at home and helped to take care of him right up until the end with the assistance of Hospice. I know my dad is no longer suffering but what it has done to me is unbelievable. I 8 months later feel like it just happened yesterday. I do not know how to deal with all of the pain, anger, sadness and helplessness. I am looking for someone, anyone to give me some guidance. When people say it will get better in time I honestly do not belive them I do not see it happening and honestly don't know if I want it to get better. I think of my dad a million times a day, I constantly talk to him and hope that he is listening and will give me a sign he is here. He was only 51 years old and I have a hard time believing that he really is gone. Then to top it off this evening I looked at our daily newspaper and saw that they may have found a cold virus that they can enhance to kill brain tumors specifically glioblastomas, and I was angry that it could not have been discovered before I lost my dad. As you can tell I am rambling on and on I just have so many thoughts and emotions running through me 24 hours a day and do not know what to do with them. Can anyone understand where I am coming from or am I really losing it?

Kathygraham
Posts: 1
Joined: May 2003

I am not happy, but am a little more relieved that there are support groups. My dad is 76 and has a High Grade Glioma. He tilts to one side, can not talk, and his eyes goes 2 different directions. I know he knows what I am saying, but it hurts so much. I hate to see him suffer. He and my mother adopted me from a horrible family and gave me a wonderful family. I feel totally alone, but I can not imagine how my mother feels. They have been married 55 years. Please tell me what else to expect. My father is 6'4", was 280, now is 194lbs.I love him and I hate for him to hurt so much. How much do they understand? He is in a nursing home, because he is such a big man. They treat him horrible. I plan on turning them in. Please give me some insight.

amyatkaz
Posts: 2
Joined: May 2003

Hi, I am so glad to finally find a support group I can relate to. I lost my dad on sept. 9th, 2002 to glioblastoma. In August of 2001 he was first diagnosed after having had a seizure. Within days he had the surgery and they successfully removed the tumor. However, we received the news that it was a grade IV. He went through radiation and chemotherapy. He had a really nice winter and spring, his favorite thing to do was hunting and he had a lot of time to do it. In the beginning of June 2002 he suffered another seizure only to find out the tumor had returned he had another surgery and got out of the hospital the day before my mom and his 29th anniversary. Only things did not get better he got much worse and on Aug 2nd we found out the tumor had spread and there was nothing more they could do for him. I am only 28 years old and I feel like I have suffered the worst pain possible aside from the pain my mom deals with. We kept my dad at home and helped to take care of him right up until the end with the assistance of Hospice. I know my dad is no longer suffering but what it has done to me is unbelievable. I 8 months later feel like it just happened yesterday. I do not know how to deal with all of the pain, anger, sadness and helplessness. I am looking for someone, anyone to give me some guidance. When people say it will get better in time I honestly do not belive them I do not see it happening and honestly don't know if I want it to get better. I think of my dad a million times a day, I constantly talk to him and hope that he is listening and will give me a sign he is here. He was only 51 years old and I have a hard time believing that he really is gone. Then to top it off this evening I looked at our daily newspaper and saw that they may have found a cold virus that they can enhance to kill brain tumors specifically glioblastomas, and I was angry that it could not have been discovered before I lost my dad. As you can tell I am rambling on and on I just have so many thoughts and emotions running through me 24 hours a day and do not know what to do with them. Can anyone understand where I am coming from or am I really losing it?

saddddd
Posts: 1
Joined: Jun 2003

Hi, my younger brother was diagnosed with a glioma about 5 years ago (slow growing type). Well, he's past the 5-year-mark and we all know the "end is near". He was put in the hospital earlier this week and will not return to my parent's home, but will go somewhere where he can get the assistance he needs. He just turned 41. I've had a long time to come to grips with this, but I can't believe how angry I have become in the last few weeks. My sister and I are in a unique place; one that no one we know can relate to. We have a brother who we love very much who is dying at such a young age and who had such a promising future. I am so angry and have no patience for anyone or anything. This may cost me my marriage. I don't know. I feel like I'm losing everything. But, I can share this with you in hopes it helps somehow:

I know grief has seven stages, but I feel so overwhelmed. It sounds like you're in the same stage of grief as me, and I dont know how to deal with it either. I can tell you that my husband lost his father from cancer when his father was 45 and my husband and his mom and sister seem to have worked through all those stages of grief and are now able to talk about him without crying -- there is still regret and all that stuff -- but no more tears. My husband, his mom and sister had difficult times (graduations, weddings, birth of grandchildren) when he was particularly missed and I'm sure you'll have those too, so somehow we've just got to get through these stages, but we must take our own time in getting through. I can't "be" where you are as my brother hasn't died yet. You can work on getting that anger and sadness out. I sincerely hope you make it through so you can be the person your father dreamed you would be. You're not losing it!

cel
Posts: 1
Joined: Apr 2003

Hi Bev. My name is Celestine. My dad was diagnosed with glioblastoma multiforme 2-8-2002. He had 4 car wrecks in 1 day. The following day I took him to our family Doctor and he had an MRI and was diagnosed with cancer. We had an emergency craniotomy and then started 6 weeks of radiation 5 x week. They gave my dad 6-8 months and really didn't think he would last that long. My dad was 80. He moved in with us and I went to Caregivers support classes. WE were told he could have seizures. My dad did really well until july and he had a grand mal seizure and lived--I had to pust him in a nursing home. That was the only seizure my dad had. His short ter memory was not good, but he could remember things from years back. My dad fought a brave battle and lasted almost 10months to the day from his diagnosis. My dad's battle ended on Dec 7,2002. I understand what you are going through. If you need to talk I am here. My email is celrbachelder@sbcglobal.net

jlm4647
Posts: 1
Joined: Apr 2003

Hi Bev, my name is Janice and I was diagnosed w/GBM 4/2/02. Four days before my 55th b'day. I had surgery on 4/4/02 and they removed all they could. The Dr. told me I had 1-2 years. That Dr. didn't give me any direction so I switched hospitals. I'm now receiving all my treatments at Henry Ford Hosp. in Detroit. I went on a clinical study and had 9 injections of gadalinium texaferin every other day along w/6 weeks of radiation. I was supposed to have 15 injections but I got tiny, tiny blisters on my nail beds on about 6 fingers so they had to take me off of the gadtx. After that In june of 2002 I started temodar chemo.
In Nov.2002 I had surgery again and they removed dead tissue. They said it was radiation necrosis. During surgery in Nov. they put in a balloon that they could fill w/radiation if needed. I went right back on the chemo and now I have to have surgery again on Mon. May 5 2003. I had 2 MRS's and a PET scan and they just can't be sure if its dead tissue or tumor. So, out comes the balloon and they will remove the dead tissue or tumor, whichever it is. If its tumor they will put a balloon back in and 14 days later they will fill it w/radiation and I will have to stay in a lead lined room for 4 days, then on the 5th day they will remove the balloon. I really am praying for dead tissue. I can't believe 3 surgeries in 1 year. I'm tough and have a very good attitude so to hell w/the Dr. that said I had 2-2 years, I'm going to have many many more. The best to you and your family.

jomareno
Posts: 2
Joined: Sep 2003

Hi Bev. I am new to this sight.but feel truly blessed after reading some of this.In Jan.99 when my husband got up he had some sharp pain in the top of his head.we seen a Dr.got a scan,nothing showed up.In July he was at work.(he does flooring work carpet,vinyl etc.)he got to where he could'nt talk.he tho't he had gotten to hot.he went outside.cooled off & got ok.went back to work,it happened again.it was 4th of july wk-end.we seen a dr.on mon. another scan.still nothing showed up.But.after that episode I started to see a problem with his speech.this rocked on til Nov.he came home for lunch,said something to me & I did'nt understand any of it.I got up immediately & made another appoint. another scan was ordered & this time it was there.the size of a golf ball.we had surg.on Mon. after T-giving and were told 6mo with treatment 3mos without.and with a lot of blessings maybe a yr.It had come from within the brain out and had the brain covered like a spider web.Dr.said he barely got enough for a biopsy.We immediatly went into radiation for 6wks.and then into chemo.for 2 yrs.we had 1 intervenous treatment per mo,and took CCNU pills every other month along with the treatment.He has done wonderful.could not work of course.was very weak.did'nt have much of an appetite when he took the treatment.for 2-3 days.his hair came out of the side they put radiation in.he gained a lot of weight due to the decadron he took to keep swelling off of the brain.Now,in April of this yr.he gotup one morn.& did'nt have any feeling in his rt.hand or arm.We called the Dr,he ordered test,MRI,nerve conduction,scans etc.nothing showed.The oncologist said if the brain shifted just the tiniest bit it could have caused the problem.he seemed to think the tumor was coming back.so he suggested the Temador for reoccuring tumors.we took 5 pills of it and it has been down hill ever since.His blood is going somewhere & they can't find where, he is running temp.every day 101 plus.he has had 10 unit of blood since the 1st of July.He can be feeling fine one min. & the next he is moaning & grunting terrible.I put him to bed for 1-2 hrs. & he gets better. He says he don't hurt but why does he grunt & moan so. It is the most nerve wrecking thing I have ever experienced.I found out during his 2 wk.adm.in july that medical people know very little about the brain.it is very mysterious.and the things it can cause.but,he has certainly become a miracle.the Dr's are just amazed with him.I believe if they could find where his blood is going I could get him up & going again.But every test has been done that is available to find it & they can't seem to do so.But to you & anyone else who reads this,PRAYER is the answer.my husband was on church prayer list near & far.If I was out in public and someone I knew ask about him,I might hear someone else near by say Oh! I know him he's on our church prayer list. So call everyone you know and ask them to put your loved one on thier prayer list.At this time in our lives we know for sure he is the only one who can truly help. God Bless!!!!
Jo in Al.

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